1-Month Post-Op Updates
Since I discussed POD 0-3 in my "Hospital Stay" post, I wanted to continue tracking my progress post-operatively here, most closely in the month after my procedure.
To simplify what recovery looked like for me, I made this chart of how I felt overall each day:
Even though the way I felt could shift in a second, I tried to be very honest (but remain as positive as I could) about how I was feeling, not compare that day to days when I had felt better, and remind myself that recovery is a patternless process.
POD 4
The main focus of the day was stretches. I was working to stretch my arms and increase my head and neck mobility which helped prevent stiffness and limit some of my pain. I also colored a little bit to work on my fine motor skills.
POD 5-14
I tried to walk at least twice a day outside, had good energy, and did lots of stretches daily. It felt good to be in a routine and not have too many symptom fluctuations throughout the day.
I also watched a bunch of television, and as someone who doesn't watch many shows, here were some of my favorites: Beef, Big Little Lies, Love in the Wild, Love Without Borders, Outlast, Ted Lasso, and The Perfect Couple.
POD 5
This was the first day I took a walk outside, and even though it was short, it was so exciting to get some fresh air again. I also showered fully independently without my sister needing to rinse the soap off my head which was a win.
We began my steroid taper and a nurse from my care team called to check in which was super sweet. I scheduled my 1-month post-op appointment with my neurosurgeon to be virtual on December 16, and my 3-month post-op appointment on February 18 in person back at the hospital. I also scheduled a PCP visit with a new local provider for December 9 per my discharge instructions and to establish care.
POD 6
Big day: I started going up and down the stairs by myself! I also went on a slightly longer walk outside.
POD 7
This was my first day in the car since discharge for a 3-minute drive to a nature trail in my neighborhood, I still had that feeling that my brain was floating like when we drove home from the hospital on discharge day, but it was manageable.
I also had a virtual visit with a psychologist (my first time seeing someone) which was so empowering. Going into my surgery, I had no idea what to expect and did not know what my physical and mental capabilities were going to be afterward. I also didn't want to put additional pressure on my loved ones having to be caretakers and therapists if I was going through a dark time in recovery (which luckily, has not happened yet) so I booked this appointment before my surgery just in case, and I'm so glad I did. She was absolutely wonderful, we talked about my entire journey from what started my road to diagnosis to my recovery, and it was like a one-hour hype session. I will definitely be meeting with her again.
POD 10
I was fully off my steroid taper and started getting pounding headaches. But one of my best friends drove all the way from our med school to spend the weekend with me and even though I was only able to sit on the couch and watch television with him it was so so fun.
POD 11
My thumb numbness stopped, woot woot!
POD 13
I woke up really early in the morning nauseous with a pounding headache and went to the bathroom to take my meds. I felt very dizzy and hot and started pouring sweat. When I was finally able to get back to bed, I fell asleep with chills, but when I woke up I felt fine. Since my symptoms had subsided by morning I wasn't too worried, but I messaged my neurosurgeon just in case to keep him in the loop. A physician assistant from my care team reached out later that day and let me know that her best guess was that I was having a bad reaction to coming off my steroid.
That evening, I could finally turn my head enough to shave my armpits by myself, so that was a big win.
POD 14
My best day yet! I felt very high energy and walked 1.5 miles on the neighborhood nature trail all in one go.
POD 15
This day was ROUGH. I couldn’t even turn my head a few inches without my head pounding. I vomited 9 times in the morning, then 6 more in the evening. My dad blacked out the room for me and I slept the entire day. I did not have any of the warning signs outlined in my discharge instructions so I was confident that nothing serious was wrong, but I was really struggling and hoping we could try something new for pain management. This day also unfortunately fell on Thanksgiving so we had some major difficulty getting ahold of the resident on-call. But with my dad's amazing persistence, we had medications ready at the pharmacy for pickup the next morning.
Even though I was super sick this entire day, POD 15 was a momentous occasion because it meant that the likelihood of rejection of my AlloDerm graft [1, 4] was pretty much zero (even though the odds of rejection of AlloDerm compared to other graft types is already very low) [2]. It also meant that my dissolvable sutures (Vicryl Rapide), which will likely be fully dissolved after 42 days, had no tensile strength at this point, meaning my body had healed the site so well that it did not need the sutures holding the area together anymore [3].
POD 16-18
I wasn't feeling well enough to go on any walks but I felt better than Thanksgiving and started having less pounding headaches.
POD 16
I was put back on my steroid, dexamethasone, at a lower dose with a more gradual taper and was also given ondansetron for nausea.
POD 17
I woke up at 6 AM with a pounding headache, then took Valium and waited an hour before adding in acetaminophen and ibuprofen.
POD 18
I woke up around 6 AM again with a stronger pounding headache than the night before. The best way I could describe it was it felt like someone had just walloped me with a baseball bat the way I shot awake in pain. With how nauseous and out of it I felt, we kitchen-sinked it (I took every PRN med I could including ondansetron) and was thankfully able to get back to bed.
POD 19-27
POD 19
I was finally able to move around again and I went on two walks that day. I had minimal headaches and my appetite was coming back. It was a really good day and I felt like I was starting to get back on track.
POD 20
It snowed overnight, so instead of walking outside, I tried the treadmill. It definitely feels more difficult balance-wise for me than walking outside so I'm glad I waited a bit to try this. I started at 0.6 mph and only went above 1.2 mph (and stayed around 1.6 mph) after POD 25, but it felt like a massive win to be able to do it. This was another great day.
POD 21
I felt great again and walked over 1.5 miles all in one go outside which was so nice. I also started my first (of many) 1000-piece puzzle on the floor. Moving around to complete it has actually kept me really active. I did not anticipate puzzle-doing to be a form of physical therapy but it definitely is for me!
POD 22
This was the best day yet! My afternoon walk was the longest one so far, I finished my first puzzle, and in the evening I felt well enough to go to a Christmas festival with my dad. It was my first time leaving the neighborhood since discharge, and we made sure to go very slowly and stay away from crowds. I had so much fun and this felt like such huge progress.
POD 23
Another great day, we went back into town for the Christmas festival again at night. I was a little more fatigued than in recent days but I still felt great.
POD 24
This was my favorite day of recovery so far! We walked 2+ miles of the local Christmas parade route and even went back to the festival that night. I felt the best physically that I have in so long. I also finished this puzzle!
POD 26
I met with a new primary care doctor and he was amazingly attentive and thrilled with how my recovery is going. I told him I was a little concerned with how I may feel after my steroid taper since this was my last day and I had a few difficulties with it last time, which he validated and told me to reach out with any questions.
I also finished my third puzzle and walked on the treadmill a lot.
POD 28
This was another rough day, I think from being fully off my steroids. I woke up with major light sensitivity, head pounding, and phosphenes that made it difficult for me to get out of bed until noon. I had major fatigue and light sensitivity, I wasn't able to hardly walk from my room to the bathroom, and I slept most of the day. I was pretty nauseous, but with the ondansetron, it didn't result in any vomiting thank goodness. I still had a pretty good appetite, but I couldn't move much and it wasn't one of my best days.
POD 29-32
POD 29
I felt better today the day before thank goodness. I went back on my Valium, ibuprofen, and acetaminophen regimen every 6 hours which helped immensely. I wasn't able to walk as much as before POD 28, but I could hardly walk at all the day before so we'll take the wins as they come. I also finished my favorite puzzle so far!
POD 30: One-Month Anniversary!
We have officially hit the one-month anniversary of my decompression surgery! Here is a progress pic of my incision site which is unreal. There are only a couple rows of sutures left toward the top, mostly covered by the hair that's growing back already! You'd never know I had brain surgery with my hair down. We got a little cake to celebrate this big milestone which I highly recommend!
POD 33
- Minimize any activities where my head is upside-down.
- I can technically do toe touches to stretch, but any action where my head is tilted down is going to be more uncomfortable, so he recommended doing as many stretches as I can either upright or lying on my back.
- If doing yoga, only do poses where my head is upright, but balance exercises are a great idea (as long as I have something nearby to stabilize myself just in case).
- No exertional activities yet- he recommended that instead of more exertion, take longer walks.
- Since I cannot turn my head super quickly, I will not be driving yet.
- The way he explained it to me is he currently thinks my head-turning speed is at 1x, he'd like me to be at 1.5x speed before getting behind the wheel for safety reasons.
- Since I have been off my steroid for a week and I seem to be tolerating it okay, our next goal is to taper my Valium and acetaminophen doses. I was presently taking pantoprazole (to protect my stomach since my ibuprofen dose is high) daily with 600 mg ibuprofen, 1000 mg acetaminophen, and Valium every six hours.
- First we planned on tapering my Valium dose to every 12 hours instead of every six starting that day, so I would be taking Valium when I go to bed and when I wake up. Then depending on muscle stiffness, I will take the Valium as needed.
- We also planned on tapering my acetaminophen dose, so I will start taking 500 mg of acetaminophen instead of 1000 every six hours.
Glossary
Phosphenes: light or shapes that can be seen even when your eyes are closed
POD: abbreviation for "post-operative day"- in the hospital, we count the day of the procedure as POD 0, the day after as POD 1, and so on and so forth
PRN (Pro Neta Rata): Latin for "as the need arises"- these are medicines not taken on a schedule and instead are as-needed
References
- Agarwal C, Kumar BT, Mehta DS. An acellular dermal matrix allograft (Alloderm(®)) for increasing keratinized attached gingiva: A case series. J Indian Soc Periodontol. 2015 Mar-Apr;19(2):216-20. doi: 10.4103/0972-124X.149938. PMID: 26015676; PMCID: PMC4439635.
- Bowers CA, Brimley C, Cole C, Gluf W, Schmidt RH. AlloDerm for duraplasty in Chiari malformation: superior outcomes. Acta Neurochir (Wien). 2015 Mar;157(3):507-11. doi: 10.1007/s00701-014-2263-x. Epub 2014 Nov 8. PMID: 25377384.)
- Odijk R, Hennipman B, Rousian M, Madani K, Dijksterhuis M, de Leeuw JW, van Hof A. The MOVE-trial: Monocryl® vs. Vicryl Rapide™ for skin repair in mediolateral episiotomies: a randomized controlled trial. BMC Pregnancy Childbirth. 2017 Oct 16;17(1):355. doi: 10.1186/s12884-017-1545-8. PMID: 29037181; PMCID: PMC5644141.
- Zhao X, Zhang K, Daniel P, Wisbrun N, Fuchs H, Fan H. Delayed allogeneic skin graft rejection in CD26-deficient mice. Cell Mol Immunol. 2019 Jun;16(6):557-567. doi: 10.1038/s41423-018-0009-z. Epub 2018 Mar 23. PMID: 29572550; PMCID: PMC6804736.
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